The story I am about to share with you is a very PERSONAL one. I’m comfortable with crying in front of the camera, however it is very difficult to cry … and talk at the same time.
So, if I get choked up, I will pause, take a few deep breaths, and be right back, probably before you even notice I have gone.
GREGORY, my husband of over 41 years, was diagnosed with DEMENTIA, most likely ALZHEIMER’S, in the 29th year of our relationship. He was 55 years old. Together, we were on the Dementia Journey for 12 years.
Let me say that I am NOT here today as an EXPERT in the field of Dementia and Alzheimer’s … but rather as someone who has EXPERIENCED it … DIRECTLY, INTENSELY.
Let me tell you a little about me …
I hold a Bachelor’s Degree in Liberal Arts, an Master’s Degree in Education, and an Advanced Certificate in Education Administration and Supervision.
I am an educator, have worked with children in regular education as well as children with special needs.
I was an administrator for a Talented and Gifted Education Program, taught Junior High Spanish.
I have taught a number of university level education courses and seminars.
I have been retired for 25+ years but have been more than active as an educator, speaker, writer, poet, blogger, actor, opera supernumerary, children’s museum curator, flea circus ringmaster, and Dementia /Alzheimer’s caregiver partner.
GREGORY earned a Bachelor’s Degree from Wesleyan University in Connecticut & received his Master’s Degree from Harvard University in Architecture, with Phi Beta Kappa recognition.
He ran his own high end architecture and interior design firm and served as architect of record for renovations at the Baha’i National Shrine in a suburb of Chicago, Wilmette, Il.
Gregory was a writer, an artist, was well versed in music and art history, was a concert level pianist, spoke French, and won many awards for his architecture and interior design skills.
While helping Gregory run his high end architecture and interior design business, I noticed that he was beginning to have unusual difficulties with managing his time, completing his projects, relating to clients, making decisions, and just many little things that were “not like him.”
I set up several doctors appointments, with psychologists, medical doctors, and neurological specialists to check out what might be happening.
Actually, we were relieved on receiving the diagnosis of Dementia, most likely Alzheimer’s, because now we had an idea of what we had been experiencing & and we could prepare for the future
… although at the time we did not really understand the nature of the roller coaster ride we would be on until his death.
Gregory was NOT a VICTIM of Alzheimer’s ... but rather a HERO.
Gregory did not SUFFER with DEMENTIA/ ALZHEIMER’S, but rather LIVED as WELL as possible, refusing to accept the diagnosis as a “DEATH SENTENCE.”
I NEVER referred to the diagnosis as HIS but always OUR diagnosis.
GETTING ONE’S LIFE IN ORDER
I made sure that our legal and financial matters were in order. A trust was set up which would take care of Gregory in the event I was unable to do so.
We both had living wills, and powers of attorney over health and finances.
There were many additional issues, permissions, and protections to put in place because of our being a same sex, unmarried couple.
For example, I had the power to take Gregory off life support if it came to that but the hospital did not have to let me in to hold his hand while he died.
Also, while both of our families were very supportive, in same sex situations one never knows if or when the family might become hostile to the relationship. Fortunately we had no problems in this ares but we took all precautions and got everything in writing.
The DOCTORS were able to RULE OUT what was NOT going on for example Vitamin B deficiency, small strokes, Parkinson’s, etc.
But being a PROGRESSIVE, INCURABLE disease, what were they REALLY able to do during those EARLY and MIDDLE stages except confirm my existing observations?
They prescribed drugs like ARICEPT and NAMENDA, which are purported to slow down the disease, but how does one measure … “SLOW DOWN” and against what baseline?
NEW SENSE: FAMILY & HOME
Instead of spending time MEDICALIZING our experience, I worked very hard creating a NEW SENSE OF FAMILY, HOME, and RELATIONSHIP to fit Gregory’s changing needs.
For the most part he dealt with the disease in his usual CALM manner. At a certain point later, the Alzheimer’s created a BUFFER which kept him from being fully aware of the changes through which he was going.
Slowly I took over more and more responsibility for our life and he was able to face each day with fears or lacks.
I was able to hire Northwestern University students to be companions to Gregory. This gave him more to do and me more time to run errands or just take care of myself.
In the beginning, I REFUSED to refer to myself as Gregory’s CAREGIVER … out of RESPECT for not wanting to diminish him to the role of being my “PATIENT.”
I remember thinking “If the disease would only stop progressing at this point I would be content.”
But PROGRESS it did … and the RESTING, level periods were shorter and the need to re-think and re-establish NORMALCY continued …sometimes on a daily basis…sometimes hourly.
Being able to monitor and provide for Gregory’s increasing needs, in a RESPECTFUL understanding way, yet not letting him become overly frustrated was more and more difficult.
My ROLE in providing for our life experiences continued to INCREASE over time.
My MAIN JOB became making sure Gregory knew WHO he was and WHERE he was. That he was in the RIGHT PLACE doing the RIGHT THING at the RIGHT TIME.
And if LOST; physically or emotionally, that I / we would ALWAYS FIND each other.
He always KNEW who I was, his LOVE for me and my PLACE in his life. He knew he could TRUST me, that he was SAFE, LOVED, VALUED, and RESPECTED.
NOT A DEATH SENTENCE
The times were not easy, but we persevered and did a good job! I was able to support him by helping him to be free of daily worries, responsibilities, and fears.
I was able to help him COMPENSATE for his changing abilities while always trying to make sure that the RESPECT & COMMUNICATION which defined our relationship never faltered.
YES, there were times when he became depressed, sad, frustrated, and fearful … but most of the time he was content and happy.
The same YING AND YANG was true for me!
Gratefully, I was retired and had all the time in the world for him … and for us.
We closed Gregory’s business and our time was now our own. We were fortunate that our financial situation was good.
Each day our love continued to grow and our tag line became, “I love you more than ever!”
Family and friends were available but they had lives of their own and even though they tried, they couldn’t REALLY understand what I was going through. Even with family and friends readily available, I felt very lonely and isolated.
I made sure that our daily life was FULL and RICH and MEANINGFUL. We enjoyed our condo and living in a very active Downtown Evanston, Illinois.
We entertained, enjoyed family and friends in our home, ate out, cooked